gms | German Medical Science

18. Deutscher Kongress für Versorgungsforschung

Deutsches Netzwerk Versorgungsforschung e. V.

09. - 11.10.2019, Berlin

Nurse-led immunotreatment DEcision Coaching In people with Multiple Sclerosis (DECIMS) – cluster randomised controlled trial and process evaluation (ISRCTN37929939)

Meeting Abstract

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  • Anne Christin Rahn - Universitätsklinikum Hamburg Eppendorf (UKE), Institut für Neuroimmunologie und Multiple Sklerose (INIMS), Hamburg, Germany
  • Sascha Köpke - University of Lübeck, Nursing Research Unit, Lübeck, Germany
  • Anna Barabasch - University Medical Center Hamburg-Eppendorf, Institute of Neuroimmunology and Multiple Sclerosis, Hamburg, Germany
  • Christoph Heesen - University Medical Center Hamburg-Eppendorf, Institute of Neuroimmunology and Multiple Sclerosis, Hamburg, Germany

18. Deutscher Kongress für Versorgungsforschung (DKVF). Berlin, 09.-11.10.2019. Düsseldorf: German Medical Science GMS Publishing House; 2019. Doc19dkvf119

doi: 10.3205/19dkvf119, urn:nbn:de:0183-19dkvf1190

Veröffentlicht: 2. Oktober 2019

© 2019 Rahn et al.
Dieser Artikel ist ein Open-Access-Artikel und steht unter den Lizenzbedingungen der Creative Commons Attribution 4.0 License (Namensnennung). Lizenz-Angaben siehe http://creativecommons.org/licenses/by/4.0/.


Gliederung

Text

Background and purpose: With currently 15 different treatment options, decision-making is challenging for people with MS (PwMS). Therefore, we developed the “nurse decision coach” programme to redistribute health professionals’ tasks to support informed treatment decision-making by PwMS following the principles of shared decision-making.

Methods: The programme consisting of nurse training and a coaching intervention was evaluated in a cluster-randomized controlled trial (RCT) with accompanying process evaluation.

It was planned to recruit 300 people with suspected or relapsing-remitting MS facing immunotreatment decisions in 12 centres across Germany. Participants in the intervention clusters (IC) received decision coaching by a trained nurse and had access to an evidence-based online information platform. In the control clusters (CC), participants also had access to the information platform and received care as usual. The primary outcome was “informed choice” after six months.

Quantitative process data were collected from PwMS, nurses, and physicians over the trial period. Qualitative interviews with nurses (n=7) and physicians (n=5) from the IC were performed at the end of the study and analysed thematically.

Results: 12 nurses from 8 centres participated in the coaching training. Due to insufficient recruitment, the RCT was terminated prematurely with 125 participants (n=42 IC, n=83 CC). However, increased rates of informed choices were indicated with 55% (95% CI 37-71%) informed choices in the IC compared to 33% (95% CI 22-47%) in the CC (p=0.0577).

Interviews with nurses and physicians indicated main implementation barriers as lack of structural resources, great effort per coaching, using a camera during coaching, and lack of cooperation/support in the centres. The training course, the coaching material, nurses’ and physicians’ motivation to take part in the study, overcoming the fear of using the camera, and cooperation/support in the centres were identified as main implementation facilitators.

Discussion and practical implications: The decision coaching concept is promising and potentially valuable in MS and possibly also in other neurological diseases as well as in complex treatment decisional situations.

In our two studies (pilot- and cluster-RCT) on immunotreatment decisions in MS, we found with around 50% (decision coaching group) versus around 30% (evidence-based information group) informed decisions, a clear indication that decision coaching compared to the provision of patient information alone, facilitates informed decision-making. Therefore, important barriers have to be identified and overcome in order to achieve structural change and successful implementation.

With more than 120 coaching’s provided, the programme has now been routinely implemented in one German MS centre. Currently, we are developing a telephone coaching programme on motherhood choice in MS.